So it turns out that four year old Francesco Pio Martinisi had Cerebral Palsy.
HBOT is not a valid treatment for CP and there is no quality science to support the idea that it may be one day.
There is growing interest in the use of hyperbaric oxygen therapy (HBO2) for children with cerebral palsy. Although there is no rigorous evidence to support this management, private hyperbaric centers have been established throughout the United States and Canada….
They are Italian and in an echo of Tariq Nadama, came to the US for a treatment not offered in their home country. CBS4 states they have spent ‘hundreds of thousands’ of dollars on HBOT ‘treatment’.
Nobody knows why the fire started but one thing is sure. There was no medically indicated reason for Francesco to be in that chamber. This was another totally unnecessary accident.
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Re the scientific basis of HBOT in CP – there is a clinical trial due to be completed later this year.
http://clinicaltrials.gov/ct2/show/NCT00290186
You know, as I read about incidents like this..I’m really starting to wonder. It is almost as if the intention behind the promotion or marketing of these “therapies” is to remove the person from the diagnosis (autism or in this case the CP.) It is as if diagnosis has become some kind of all encompassing shroud and a human being doesn’t exist underneath..how else can one explain doing things like this to a child..I hope this makes sense…
I see that clinical trial is still recruiting, me.yahoo.com; it will be interesting to see what the actual findings are before we start sticking kids into dangerous situations like HBOT chambers. I actually hope it shows it to be effective- substantially effective. It would be great to find a therapy that actually helps and is worth the risk.
The woman died today:
http://www.miamiherald.com/news/breaking-news/story/1027566.html
This is very sad. Very sad.
I need to check with real hyperbaric therapy centers, but the idea that they could use flammable materials in a pure O2 environment at high pressure suggests an accident that was just waiting to happen.
I note that the GR apology email about this incident is placing the blame on the technician. Odd, since the HBOT group in question makes a big point out that physicians supervise all HBOT:
I also note that GR is telling people that the child had about 40 HBOT sessions. I don’t see this in the general literature. Will Dr. Jay Gordan be taking GR to task for HIPPA violations?
autismherd, I think it’s rotten that you would exploit this horrific incident to spread your propaganda. Nobody intended for this to happen. It was negligence. What you say makes no sense.
There have already been a couple of randomized controlled trials of HBOT for CP. No difference with room air was found.
From this review: “Children undergoing HBOT were reported to experience adverse events, including seizures and the need for ear pressure equalization tube placement, but the incidence was unclear.”
Saddened to hear this is much worse than I had thought, especially in light of btdt14’s post.
Patrick
HBOT is not quackery! My daughter has had over 300 treatments from the time she was two years old. She is now 10. She has had absolutely wonderful results. And this isn’t just a mother’s wishful thinking – we have before and after brain scans to prove it. The scans show actual increased brain activity. She went from an unhappy child lying around with no muscle tone in her trunk to a very happy child who sits up, hops and crawls around, climbs on furniture, plays with toys, pushes “talking” buttons to communicate . . . I cannot stop thinking about the boy and his grandmother. I am so incredibly sad for this family, however, I feel they made the right decision to give their boy HBOT. This was a tragic accident but it will not keep me from giving my daughter HBOT treatments as we are able – just as a plane crash doesn’t deter people from flying.
You’re absolutely right. HBOT is not quackery. HBOT for cerebral palsy or autism probably is.
8 years? It’s really a shame that you don’t credit good parenting/teaching/support in your comment. It may have more to do with it than anything.
Can you elaborate on this? Please, in your own words, tell us about the brain scans. Please include references to the appropriate scientific literature (this won’t be difficult if it’s not wishful thinking). Tell us exactly what the scans mean, and how the conclusions were reached.
8 years? It’s really a shame that you don’t credit good parenting/teaching/support (and yes, even development) in your comment. This may have more to do with it than anything.
Me neither. This is awful.
Based on what? I think it’s quite possible that a court somewhere will opine that their decision to seek HBOT for Cerebral Palsy was influenced by misleading or incomplete information.
Plane crashes can deter people from flying specific carriers/carrier types. Ever hear of ValuJet?
I was re-reading some of the posts on this blog-and I found a reply to a statement I had posted..I am a bit perplexed..What propoganda? I thought that this was a terrible tragedy. I was trying to make a point about “cures” in general-obviously, I didn’t do it very well. It certainly wasn’t my intent to offend-I apologize if I did.
Autismherd wrote:
Your point was fairly clear. The medicalization of, and reduction a person with a disability to a set of “symptoms” does often seem to be an intention (conscious or not) of those selling medical “treatments” (it also seems to be a common path for those struggling with acceptance). This is hardly propaganda, and far from offensive. I wouldn’t waste too much time worrying about Kyngdingxx’s fantastic implied straw man that anybody intended for this to happen. That’s clearly untrue and has nothing to do with what you wrote.